Ahhhh ACA ACA!

Bless you. You've helped creative folks a bit.

Apr 03, 2025

This pic is over two decades old, the scene is not.

It’s fitting that I caught a real whopper of a head cold (or who knows what) right when I was planning on chiming in about US healthcare and the ACA.

Nowadays, when you get sick and mention it to a friend or coworker (by text of course) for whatever reason - a change of plans or just an update, you almost always get a response that includes one to fifty unsolicited remedies and opinions about how you got sick.

It wasn’t like this before. I know because I’m sensitive to it. But that’s me. Maybe other grownass people like being told how to live, but I’ve spent a third of my adult life in pain, at medical appointments, on the phone with insurance companies, ingesting supplements, trying woo-woo cures, on the phone with hospital financial departments, sick, eliminating foods, debilitated, on reddit commiserating, working soul-crushing jobs for insurance, etc.

I survived serious illness all without information from friends about vitamin D and quinine. So really, people should be asking me for advice. Well, I’ll just give it to you now: go to sleep.

I don’t have an exact marker for the before and after, but it seems like the amount of unsolicited advice has been rising in direct relation to the rapid enshitification of our health(insurance)care system. It’s been creeping for a long time, but it really popped off right around the time insurance codes took the lead over doctors when it came to patient care.

We’re all so accustomed to not getting sufficient health care that we’ve become obsessed with finding reasons that people get sick (hint: we are made up of organic material), how to not get sick, and finding ways to get better without the help of “western medicine”. But the things is that it is not really western medicine that has failed us, it is the system that controls our access to medical care that is at serious fault. Like, criminally serious fault.

We’ve misdirected our disdain for western medicine when it should be directed toward the profit-mongers that control our access to western medicine.

That’s why the ACA (Affordable Care Act), was and is so important. It’s an imperfect band aid, sure, but it’s the only thing we’ve got protecting us from the complete and total corporate control of our health right now. It protects access to health care for the people that need healthcare. It’s pretty simple if you’re looking at it from a compassionate human POV. If you’re looking at it through earnings reports, it’s a profit barrier.

I’m alive today because of medical advancements. Had I been diagnosed with Hodgkins a 5-10 years earlier than I was I probably wouldn’t be here. I certainly wouldn’t have a spleen. I’m even grateful for my currently uneven eyebrows from the 38 botox injections I get every 3-4 months to reduce crippling migraines1. I’m also grateful for my bangs covering those eyebrows, but that’s not an ACA thing. Though I do believe everyone should have access to a stylist that knows how to cut bangs.

I marvel at how great western medicine is every time I see a news story about a celebrity getting a rare diagnosis. How many people do you know have received a rare diagnosis? I don’t know any. Oh we’ve got the technology and knowledge. Our tax dollars fund(ed) a ton of research. The universities, supported by our state and federal taxes, pass down centuries of collective knowledge to doctors that will later not be able to heal us without gold health insurance plans.

It’s about access. The wealth hoarders have done a great job controlling the narrative of who deserves access to healthcare. The ACA broke the narrative a bit and the heartless greed huffers are itching to fix it back in their favor. Because healthcare is expensive, there’s an unspoken worthiness requirement in America. So we see a couple things going on that are directly related to reinvigorating that narrative.

The first is a sociocultural obsession with finding reasons/blaming sick or injured people for their conditions. It reinforces a biased, scarcity-based system that otherizes sick people when we say things like “well, they ate this or that” or “they didn’t do ______” or “he was old/fat/a substance abuser” or “I never get sick”.

That all puts us all on edge because when or if we do get sick, we are trained to find personal fault, not fault in oppressive systems. And then we are told that a positive attitude will heal us. In general, it’s kind of acceptable and expected now that people are up in each others private health business with judgment, opinions, and advice2. Being sick or disabled nowadays also includes a lot of totally unnecessary mindf*ckery.

My port after they pulled it out. So I call this photo “Open Faced Pulled-Port”.

Thanks to the ACA, health care isn’t tied to employment (as much). But with the new wealth hoard administration we are already seeing how they’re fixin’ to relink employment to health care. Maybe you’ve heard them say, “There’s dignity in work”? Sounds harmless, maybe even a bit true? Not when in comes from people that have no interest in shoring up the issue of dignity of basic healthcare.

When I say they’re controlling access, I mean throwing up financial barriers and bias barriers like they’re Bed Bath & Beyond coupons. There’s our patient financial barrier to insurance coverage and treatment. Physicians face financial barriers when patient interaction time, diagnosis, and treatment is dictated by for-profit insurance companies.

All of that compounds with inherent bias in research and treatment. With or without the ACA, what little progress was being made in addressing the bias in medical research and education is being unceremoniously erased.

I’ve seen studies that attempt to put a number on how much the bias costs the country3, but those numbers are numbers. It took nearly a decade for me to get a proper diagnosis and help for endometriosis. By the time I was able to get the necessary laparoscopic surgery, I was down to about ten “good days” a month and I was working full time at a job I didn’t like. When you are being gaslit by insurance companies and rushed healthcare professionals, just in survival mode trying to work so you can make more appointments with more gaslighters, you don’t stop to think just how much it is costing you as far as career, creative pursuits, travel, relationships, mental heath, etc.

The ACA turned 15 last week. I’ve been a cancer survivor for 23 years so I remember what it was like before the ACA. As someone that only ever wanted to pursue creative work and projects, it was devastating to go through all that cancer crap and then pretty much be forced to find a health-insurancey (9 to 5er) job4.

Even with insurance, I still always had medical bills, medical debt, and new side effects from treatment to deal with. It was not the kind of lollipops and glitter bucket list cancer survivor existence y’all see in stories and movies. I try not to think about the cost, but midlife does make you look back and go WTAF (and, no wonder I could never afford a house).

There was a hashtag going around last week: #ACASavesLives. I know we can all rally behind the moral issue of protecting direct lifesaving medical care and medication. We also need to get behind the idea of lifesaving including the ability to live life. I know I am not the only person, the only creative being, that has spent more time navigating healthcare, insurance, financial biz, and/or feeling like ass than on their work, dreams, and goals.

We’ll never know the cultural cost of our for-profit health system, but I’m telling ya, if we don’t protect the ACA and take further action to address bias and get profit out of medicine5, more and more insurance lawyers from Florida will be in charge of culture and AI will handle arts & entertainment.

Ok that was a real stretch. But was it? It’s hard for me to reign in anything healthcare related because I can’t extract it from my own experience.

It’s nuts to think about it, but I don’t think there’s been a day since April 11, 2002 (my ohdamnitscancer day) that I haven’t had to think or deal with healthcare related stuff. I don’t have stats but I’m pretty sure this is the case for millions of people.

Just a suggestion, but the next time one feels like telling someone how to get better (and they didn’t ask) or are spouting or swapping opinions about why people get this or that illness, one could take that “help” energy and go call out the “healthy” health-privileged people that are calling the shots for our nations healthcare, determining the fate of people most in need. We’re already paying for it. Bigly.

Thanks for reading my story/observations/rant/plea. Feel free to share yours in the comments or in restacks with notes or in the form of song and/or dance.

I can’t remember what this thing is. Looks like an extra from *Short Circuit*.

Paid subscriber bonus: In honor of the ACA anniversary I’ll be sending out a post with a link to watch the documentary I made of my cancer experience, Going Nodal: The Hodge Experience. I didn’t have health insurance when I was diagnosed (that should really be the tagline). The film is a half hour and very early aughts Hi8 DIY, but some people liked it. It even made its way to France and Gilda’s Club.

I’m so grateful for your support. I know not everyone can do paid subscriptions. I can think of a couple dozen newsletters and projects I’d like to, need to, and will give money to, but can’t just now.6 If there’s ever something you’d like to read or watch that is behind my paywall, just reach out and I’ll get you access.

Having people read, comment, and share is the ultimate support. So thank you thank you and seriously, thank you!

Now, tell me whacha think of trying to live an artsy life and the state of healthinsurancecare in the USA.

Ahhhh ACA ACA!

Bless you. You've helped creative folks a bit.

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